Last year, Valeka Rigel gave birth to a healthy baby boy. But the new mom had to wait months before she could see her child’s smiling face.
That’s because her son Zakary had a birth defect so rare that the Centers for Disease Control and Prevention believe just one in 12,200 babies are born with it.
The first sign that something was wrong came when the Riegel was five months pregnant. An ultrasound showed an unusual growth that doctors guessed was a cyst. After more tests, they realized it was actually an encephalocele.
Encephaloceles form when a baby’s skull doesn’t close properly. Brain tissue escapes through a gap in the skull bone, forming a pouch of skin outside the baby’s head. Zakary’s pouch formed right between his eyes.
“I just sat there and cried,” Riegel told Today about getting the news. “I said, ‘I don’t understand: I’m here for a facial cyst.’ I’m thinking a pimple.”
Doctors worried Zakary wouldn’t be born alive, and a team of 22 doctors at the Cincinnati Children’s Hospital were assigned to look after Riegel. But thankfully, her C-section went smoothly. Apart from the mass, Zakary was totally healthy.
But it would take months of waiting and a grueling surgery to remove the growth from Zakary’s face.